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While my family celebrated Mother’s Day each year when I was growing up, I remember my mother telling me that “every day is Mother’s Day.” November is National Family Caregivers Month and I think my mother’s perspective applies – every month is family caregivers month. As Edna Ball explains in her recent blog post, “… the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.” Anyone living with someone who has been diagnosed with an ongoing disease knows that the illness impacts the entire family on a daily basis and not just the person receiving the diagnosis.

In addition to highlighting some family care partners who participate in the Unity Walk, we want to take this opportunity to share some resources for care partners and focus on legislative initiatives underway to provide them with support.

RESOURCES
The National Parkinson Foundation (NPF) is one of several organizations that offer resources to help you navigate the various challenges that may arise as a care partner. These resources include a Toll-free Helpline, a Caring and Coping Manual, a Parkinson’s disease (PD) Library, a Caregiver Forum and a Parkinson’s Central Smartphone App. Here’s how you can learn more to benefit from NPF’s resources and tips for care partners.

This past week, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. Learn more about the roundtable and pending legislation about caregiving.

PARKINSON’S JOURNEY: A CARE PARTNER’S PERSPECTIVE

David and Gayle Maloney

“Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope,” states David Maloney. “You learn to appreciate all of the moments, both the large and small, of the life that you are living together. You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.” This is one perspective of a family’s Parkinson’s journey … read this guest blog post written by a husband, and care partner.

A LONGSTANDING CARE PARTNER

Edna and John Ball

Edna Ball, co-founder of Team Parkinson has lived with Parkinson’s disease since she was 11 years old – first with her mother’s diagnosis of PD at the age of 48 and then when her husband, John was diagnosed over 40 years ago. The years have brought wisdom and some valuable lessons which Edna has shared on our blog. Her comment that spoke to me the most was, “Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.” Read more of Edna’s story about being a longstanding care partner.

CARING FROM A DISTANCE

Sara Beam and family

Sara Beam’s parents lived in North Carolina. Her father had been diagnosed with Parkinson’s disease close to twenty years ago. She and her brothers lived in New York, Massachusetts and Texas and needed to develop strategies to care for their parents from a distance. As Sara’s mom became ill with cancer and after her death, the situation required an increased level of care. Learn more about how Sara and her siblings took on the responsibility of caring for their aging parents from a distance.

The Unity Walk is about community and it takes a loving community to participate in the care of someone living with Parkinson’s disease. Whether you are a care partner for your spouse, parent, child, sibling or friend, we take a moment in November to honor all you do throughout the year.

When I was 11 years old my mother was diagnosed with Parkinson’s disease (PD) at the age of 48, and so began what was to become my life long journey as a care partner. My mother lived with PD for 37 years. I also married a man who after our 10 year anniversary was diagnosed with the same disease. My husband now has had PD for over 40 years.

When this journey first began the term for me, and thousands of others, was caregiver. In recent years the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.

Over all these years I have learned some valuable lessons. The most important is that open and honest communication is vital. None of us are mind readers, and it is crucial for both the care partner and the person with PD, to have the freedom to express themselves without fear of hurt feelings. Walking on eggshells all the time in fear of stressing the other out is even more stressful than getting feelings off one’s chest and then dealing with the issues at hand. And stress is bad for all concerned. Honesty, mixed with kindness and compassion, is key.

It is also extremely important to take care of your own physical, mental and emotional health so that you can be fully present in the care of your loved one. Sometimes that means taking a break from the day-to-day grind. And that in turn might mean asking for help. Asking for help when you need it, without guilt, is one of the smartest things you can do. Surround yourself with family and friends who can chip in when needed.

Educate yourself about the disease, participate in support groups but don’t go overboard and don’t let PD become an obsession that robs you of all the good things you can and should still enjoy. Read about the latest research up to a point, accompany your loved one on doctor’s visits, and keep a current list of medications with you. Do whatever is necessary to stay on top of things, to be prepared and thereby to reduce your own level of stress on a daily basis.

John Ball with wife and care partner, Edna — at the Parkinson’s Unity Walk representing Team Parkinson

But always remember that not everything in the health of your loved one is about Parkinson’s. There is the normal aging process that visits all of us, care partners included, and it’s good to remember that and not get bogged down thinking everything is the fault of PD. And remind your loved one of that too as you work together on this mutual path to a better and easier existence.

If you practice mutual respect and maintain a sense of humor, life with Parkinson’s disease will be easier. Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.

You can learn more about Edna Ball’s journey as a caregiver and her work with Team Parkinson, via Team Parkinson’s website team-parkinson.org.

My Dad, now 83, was diagnosed with Parkinson’s in his mid-60s. He has remained remarkably active, both physically and socially, despite a steady worsening of symptoms over the years, which Deep Brain Stimulation (DBS) surgery a few years ago helped improve for a time. However, a major component of managing his disease well was the steadfast, strong support of my Mom as his caregiver. That changed dramatically when she was diagnosed unexpectedly with stage 4 terminal cancer in August of last year. We couldn’t replace her excellent care, but as her ability to help my Dad diminished, my brothers and I learned to work together from afar to care for the both of them.

While one of my brothers and I were able to make frequent visits to their home in North Carolina from Texas and New York, respectively, much had to be done remotely. Frequent phone calls were critical to help coordinate needed support and both their medical appointments. But, with my Mom’s memory damaged by her disease, and my Dad’s cognitive and memory issues exacerbated by the stress of the situation, more help was quickly needed. My brother from Massachusetts and his wife looked into care agencies in North Carolina and found a good one through online resources, which my parents reluctantly and sparingly began to use.

My Dad had never learned how to use email, another thing that my Mom took care of for him. But, we still needed to communicate with him quickly in written form to compensate for his memory issues. The initial solution was giving them a fax machine, so I could send reminders of doctors’ appointments, flight schedules for visits, etc. Later, we also started using remote computing, so that I could access my parents’ home computer from anywhere to print clear, large-print copies of documents for my Dad, whose eyesight had worsened significantly in the past year due to his Parkinson’s. We automated the few remaining monthly payments that my Mom hadn’t already done, so my Dad didn’t need to start writing checks on a regular basis. By setting up online access for their bank and credit cards, I was able to monitor their accounts from afar.

As my Mom’s condition worsened, we convinced my parents that they needed more help from professional caregivers. By the time my Mom passed, my Dad had gotten used to the caregivers and was willing to keep them in place for ten hours a day. But, it soon became apparent to him and us that living in the house without my mother’s care was too much for him, as he began to have more falls and his reliance on the professional caregivers grew. After much research by my brother and his wife, my Dad decided he would move to an assisted living facility in Massachusetts. In August, five months after my Mom’s passing, I drove him 850 miles to his new home, just a few minutes away from one of my brother’s home. He would now get to live near his only grandchildren. It’s rare that anyone skips their way happily in the door to assisted living and he’s still adjusting to life there, but he’s confident it was the right choice for him.

This guest post was written by Sara Beam, who has been a longstanding supporter of the Parkinson’s Unity Walk–especially as a volunteer on Walk Day.

A care partner’s perspective about the things you learn living a life with Parkinson’s disease

By David M. Maloney, Husband and Care Partner, PUW Team Nashville

David and Gayle Maloney

My wife Gayle was diagnosed with Parkinson’s disease in 1998 – 37 years old, two young children, and a husband trying to be supportive.

I don’t know how I would react if I had been diagnosed with Parkinson’s disease but Gayle’s reaction was no surprise. She met the disease with determination, optimism, courage, and grace. She was determined to lead a normal life. She was confident that a cure would be found.

For almost ten years, Gayle’s medications were managed and allowed her to lead a somewhat normal life. But those meds that we had been told would stop working, did. Not all at once and not all of the time. Shortened length of effectiveness. Unpredictable dose failures. Or, just as difficult, medication side effects such as uncontrollable excessive movement called dyskinesia. We were fortunate. Gayle was a good candidate for Deep Brain Stimulation (DBS) surgery. Almost twelve years to the day following her diagnosis, Gayle underwent bilateral DBS surgery.

To say the surgery was a success is an understatement. It was life changing. Gayle got her life back, but we know that the underlying disease is still progressing. Without DBS, her life, our lives, would be much more difficult.

Parkinson’s disease is a progressive disease without a known cure. Our life with Parkinson’s has also been progressive. With Parkinson’s having been part of our life now for 16+ years, it is difficult to remember our life without it. Our life and a life living with Parkinson’s disease are the same.

Initially, there is the shock of hearing that the person you love has a disease that does not have a cure. You first want to learn everything possible about the disease – surely people are working on a cure. They are, but a cure takes a long time. You learn to accept setbacks and settle in for the long term. You think about the future differently. You have to have direct and honest discussions about doing things now versus waiting until a future where doing some things may not be possible. You have these discussions in addition to all of things that all families face and you have to have them with a partner whose emotions have become a little more fragile.

You adjust by doing small things like going to matinee movies because your wife can’t stay awake in the evening. You plan for travel differently because she can no longer drive any significant distance by herself. You want to help your loved one. You learn to balance your desire to help, to speed things up, with the person’s desire, sometime stubbornness, to be independent and do things for themselves regardless of how long it takes.

Following DBS surgery, Gayle’s speech became more slurred. This, coupled with the soft tone associated with Parkinson’s, often makes it difficult to understand her. We have an ongoing dialogue about my “selective hearing” and her speech.

You also discover that unlike a single entity that was the beneficiary of the wildly successful ALS ice bucket challenge this summer, that there really isn’t a single voice for Parkinson’s disease. You wish there was a single national entity for focused attention. The Parkinson’s Unity Walk and Parkinson’s Action Network come the closest to being that entity.

Finally, you realize that this is your life together. All people and all families face difficulties in life. Living with Parkinson’s disease is just one of the things that makes our life a little bit unique. Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope. You learn to appreciate all of the moments, both the large and small, of the life that you are living together. You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.

Photos are in Courtesy of the Parkinson’s Action Network and Lisa Paillex Griffin

On October 22nd, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. The legislation called In-Home Caregiver Assessment Resources and Education Act or In-Home CARE Act would create a caregiving grant program to allow eligible organizations to carry out home visiting programs for unpaid caregivers.

Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. For Lisa and Joe, this caregiver bill would have a direct impact on their lives. Lisa has been a caregiver for her father who has Parkinson’s disease and her mother, who recently passed and also had Parkinson’s.

Charlene shared her experience as a care partner, but also stressed the uniqueness of her situation. Unlike many of the people often thought of as care partners, Charlene is the care partner to someone who is not elderly. Her husband, Joe was diagnosed 13 years ago at the age of 33. She said that it was very difficult to not only find resources for younger people affected by chronic illness, but also for her young family.

Charlene found the roundtable very worthwhile. “I now know what Joe feels like at PAN events, when he gets to hear that people experience what he experiences,” Charlene said. “It felt like I had 1,000 pounds lifted off my back. I carry that and I didn’t even know it until I was there.”